Call for every health insurance plan to cover Phenylketonuria

Heinz Family PhilanthropiesDec 5 2009

The following is an op-ed by Jeffrey Lewis, President of the Heinz Family Philanthropies:

Credit Senators John Kerry (D-MA) and Robert Casey (D-PA) with a significant contribution to the health care debate: a bill ends a glaring disparity in the way Americans living with Phenylketonuria (PKU) control their potentially devastating disease, and the way others living with serious chronic conditions are treated. "The Medical Foods Equity Act of 2009" aims to save affected families thousands of dollars in out-of-pocket costs, cut long-term costs for the entire system, and offer 20,000 Americans a better shot at healthy, happy, and productive lives.

What is PKU? PKU inhibits the body's ability to process protein, leading to severe brain damage. PKU appears in between 1 in 13,500 and 1 in 19,000 live births in the U.S. If the condition is not identified and controlled, its victims suffer grave neurological damage, losing an estimated two-to-four points of IQ per year, and running the risk of seizures, microcephaly, mood disorders and profound retardation. If diagnosed, these conditions can be prevented by a diet of the specially formulated foods which prevent toxic accumulations, and PKU kids can go on to lead nearly normal lives. Many adults can and do function with PKU as long as they can have an uninterrupted supply of the formulas.

But there's a problem. Medications that control chronic conditions are generally covered by insurance. But because PKU is treated by diet, not by a pill, many families and individuals are forced to pay thousands of dollars a year out of their own pockets to avoid what otherwise would surely be a slow death in an institution. The distinction between diets and medication for treatments is arbitrary, widespread and wrong.

We've come part of the way towards equitable treatments. Almost 50 years ago, newborn screening programs were developed, and now all infants in the United States are tested for so called "errors of metabolism." Early detection and consistent treatment will prevent the neurologic damage done by PKU. Nationwide, spending about $340 million a year on PKU diagnosis and maintenance could save almost $2 billion a year while assisting 20 thousand families hit hard by a traumatic disease. It's good economics and a good reflection of the moral thinking that should be at the heart of our health care debate.

Unfortunately, the Newborn Screening Saves Lives Act passed by Congress last year does not mandate or fund treatment of PKU or other similar disorders, leaving it up to the individual insurance plans to decide whether to treat these children.

38 states require that health insurance plans or other state programs cover PKU treatment. But even in the states requiring PKU coverage, there are huge gaps. For example, health care plans regulated by the federal Employee Retirement Income Security Act (ERISA) - self-insurance plans by large employers or unions -- are exempt from state requirements to cover PKU treatment. 134 million Americans are covered by ERISA-regulated health plans. And, of course, if you lose your insurance or you're forced to change plans for any reason, you may be out of luck, as well.

Jennifer Ruland, of Binghamton, New York, found out about the ERISA loophole the hard way. When she became pregnant last year, she elected to take the most expensive and comprehensive HMO her company offered. "I never thought for one minute that something like PKU would not be covered," she says. But when McKenna, now five months old, was diagnosed, Jennifer discovered that her company is self-insured, and that the hundreds of dollars a month she spends on the special formula her daughter needs to thrive are not reimbursable because the foods are "over-the-counter." Adds Jennifer, "I think the health care industry just needs to realize that PKU is serious and the diet is not optional," if PKU children are going to grow up to live normal lives.

Steve Droogan, of Pennsylvania, lost his insurance through his parents' plan once he graduated from college. A COBRA cost him $400 a month and did not cover his $1600 per month cost of PKU coolers, which provide 80% of his nutrition. Steve managed to barely get by on free samples, help from non-profits, and out-of-pocket support from his parents. Steve finally landed a job with insurance that covers his PKU coolers, but will likely face battles for coverage of his pre-existing condition, should his company change insurers, self insure, or he try to take another job.

Senators Kerry and Casey's foresight in introducing this bill may not be rewarded with a place on a jammed Senate agenda. But this should be the beginning of the process, not the end. Action at the state level could be just as important. As the legislative season approaches, every governor, and every candidate for the governor's office should demand that every health insurance plan offered in their states include coverage for PKU. By taking that one step, a governor can ensure that thousands of PKU families are treated fairly and equally -- all that PKU families ask. Sometimes, creating health care solutions is just common sense. Now is the time to act - it's the frugal thing to do. And the right one.